FSHD is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and FSHD in particular.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
Latest Blog Posts
If you’ve been on our social media channels, you may have seen our posts about actor Dan Levy’s Omaze campaign to raise funds for the FSHD Society but you may not know his family story and his connection to FSHD. Dan and his father, Eugene Levy, are actors and co-creators of Schitt$ Creek, a Canadian…
In their offices in Maryland, just northwest of Washington, DC, miRecule Inc. and its founder Anthony Saleh, PhD, are hard at work developing a novel treatment for FSHD. In the early 2000s, Saleh was a graduate student at Johns Hopkins…
Upcoming Featured Events
New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the Meeting Flyer Download the 2019 NYC FSHD Family Day Agenda Join us for our first-ever New York City FSHD Family Day Conference to meet top researchers,...Find out more »
Please join us for a spectacular fundraising event in honor of Zachary Phillips! We are raising funds for treatments and a CURE for FSH Muscular Dystrophy. Live auction, car show, raffles, door prizes, music, food & more!!! $10 Wristband fee (covers food plate) Motorcycles: Meet at noon at “House Divided”: 1659 Woodruff Road, Greenville, SC...Find out more »
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made...Find out more »